Mary K. Talbot is a public relations professional, often involved with health organizations that are reshaping care to be more patient-centric. In her own life, in 2001, when her infant son encountered problems after birth and died two weeks later, she challenged rules and regulations so that her son could live his short life to the fullest.

Providence Business News asked Talbot to reflect on the changes now underway develop a health care system more attuned to patient needs.

PBN: Much of the new emphasis in redesigning the delivery of health care is on patient-centered medical homes. Is that enough? What role do you think the patient should play within the framework of health care delivery today?

TALBOT: Patients should always be the center of health care delivery, regardless of the setting in which they reside, whether it’s an adult day care center, a community health center, a nursing home or even a pediatrician’s office.

Medical homes are an important step in achieving patient-centered care to ensure that there is one repository of information that is being shared among a coordinated care team. Two of my clients, Blackstone Valley Community Health Care and Tockwotton Home, are currently taking the concept and building new physical structures that will support their focus on patient-centered care.

Next month, Blackstone Valley will open a new, 32,000 square-foot, $6.7 million complex that will house physicians, dentists and mental health providers under one roof, making health care accessible and convenient.

On Dec. 15, when Tockwotton on the Waterfront opens, a new model of household living for seniors will be unveiled. Small neighborhoods of apartments will be physically clustered together to provide a more intimate, holistic care setting.

While both organizations are creating new buildings to meet their patients’ needs, their focus on patient-family centered care extends far beyond newly configured buildings.

Tockwotton has broadened its definition of a care team from nurses and doctors to also include dietary aids and housekeepers (virtually anyone who has regular contact with a resident). These caregivers meet daily to discuss a resident’s status and each participant is asked for input.

Collaboration and communication are key to patient-centered care and a medical home reinforces those fundamentals.

PBN: Do you think that patients need to have an advocate made available to them through the hospital systems in Rhode Island?

TALBOT: Yes. They need to make sure that their medical record is up-to-date and accurate, that observations from their families are being incorporated into their medical charts, that they are educated on how to avoid a readmission, that they are well educated on their options at the time of discharge and that they are aware of what the consequences of each of those decisions.

In my experiences, I’ve also discovered times when a hospital-advocate can’t ethically help you make a decision, i.e.. selecting a rehab facility. It’s in your best interest to have an objective, educated advocate of your own to take notes during doctors’ meetings and to help you make educated decisions, especially when you’re in the midst of a medical crisis.

PBN: How do you think that technology can change the equation for patients in their interactions with doctors and nurses?

TALBOT: Technology has great promise for improving communications, through electronic health records, telemedicine, and electronic communication with their caregiver.

These methods enable patients to schedule appointments, to get appointment reminders, to ask questions of their doctors, to receive flu shot reminders and to motivate people with chronic diseases to take preventative measures for better health.

It’s a step in the right direction when someone working the third shift can email their doctor at 3 a.m. using the patent portal, or when a diabetic is reminded that their blood level needs to be checked within the hour.

I remember when The Saint Elizabeth Community became the first nursing home in the state to adopt electronic medical records just five years ago. What a milestone it was! Now EMRs are a routine tool.

When Tockwotton on the Waterfront opens its doors, it will mark a new revolution in health care. Tockwotton will have the first memory care program in the state to feature assisted living apartments equipped with sensors to alert caregivers if there is an issue behind closed doors.

This new technology will monitor a resident’s movements, analyze the data and identify daily patterns. A silent alarm will be sounded to a nurse on call if the resident significantly deviates from that behavior, signifying a problem with which they may need assistance, i.e. they’ve fallen or they are agitated. The system will allow privacy and independence without having to sacrifice safety and good health.

PBN: Your own personal experience led you to "break the rules" regarding patient care in hospitals. What happened?

TALBOT: Eleven years ago, my infant son, Lucas, stopped breathing an hour after being born. He was resuscitated minutes later, but started having progressively worse seizures that left him on life support.

He only lived two weeks but his father and I fought for every second of that time to be about living his short life to the fullest. It meant that we had to break some rules to achieve that goal. When we wanted to bring him outside to feel sun on his face, for example, it meant enlisting a phalanx of security guards to escort him from his room and back.

Introducing him for the first (and only) time to our large group of friends and family necessitated the hospital to broaden its definition of “immediate family,” and bringing him home to die meant an out-of-the ordinary discharge.

We didn’t want others who followed our footsteps to have to ask for the same considerations, however. We wanted the words “normal” and “routine” to be redefined without interfering with the delivery of care. Consequently, I jumped at the chance to serve as co-chair of the first NICU Patient-Family Centered Care Committee when it was formed in 2006.

Together with other parents, we helped rewrite the rules, increased communication between families and caregivers, and contributed to the family-friendly design of the new NICU. I feel like my contributions as a member of that council are one way I’ve helped to honor my son’s memory.

Now, in 2012, I’m finding myself having to apply lessons learned from that experience in a different setting – within adult ICUs, rehabs, assisted living and nursing homes – while advocating on behalf of my mother who is suffering from Parkinson’s-related dementia.

We all have life circumstances that force us down an unforeseen path.

PBN: One of the training protocols of a patient-centered community health center in Alaska is that nurses and providers have to learn to listen to patients in 10 different ways. Does this kind of emphasis on listening need to be reinforced in Rhode Island?

TALBOT: There isn’t a day that I don’t tell myself to slow down, focus, and really listen to my clients, my family and my friends so that I may respond most appropriately to their needs.

In a health care setting, however, effective listening is a job requirement because the consequences of not hearing patients can be devastating, if not fatal.

Our first priority as a society should be to ensure that there are full-time interpreters (on staff) who can listen to patients in their native language.

Second, we need to guarantee that there are adequate staffing levels within a health care setting to allow caregivers the time to listen. Third, we need to train those medical professionals to communicate at optimum capacity with, perhaps, a program like the one you referenced in Alaska.

There’s no denying that it’s an uphill battle to provide additional qualified staff and fund training programs in health care settings in this economy. I look at the health care future of the baby boomer population and I am especially concerned. Year after year, there are proposals to make cutbacks in Medicaid reimbursements for eldercare, yet the system is already stretched to its limits.

We need to ensure that changes to the health care delivery system will help us move towards a future where all patients – from birth to end-of-life – will be afforded an attentive care-giving team who will be equipped with the financial and human resources necessary to allow them to listen and to respond appropriately to patients’ needs.

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